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OSR: The Littlest Consumers and other posts from Neurodiversity.com

14 Jul

There has been much discussion here and elsewhere on the net about OSR #1, the chelation chemical sold as “oxidative stress relief” supplement. The latest round of this was sparked by a story in the Chicago Tribune, FDA warns maker of product used as alternative autism treatment.

Much of the early investigation of OSR #1, it’s origins as an industrial chelator and so on, were done by Kathleen Seidel of Neurodiversity.com. Ms. Siedel is probably the most thorough blogger (or writer of any kind) I know of. Her posts are long and detailed and well referenced.

Her recent post, OSR: The Littlest Consumer, takes on the subject of internet reports of OSR being given to small children. The website for OSR (CTI Science) states, OSR#1TM is not recommended for children under 55 pounds or under 4 years of age.”

And, yet, OSR appears to be being given to small children. Also, if the internet reports are accurate, this occurs sometimes under the advice of DAN doctors.

People interested in a thorough discussion of OSR can reference previous articles by Ms. Seidel include:

Haley’s Chelator: For Cats Or For Kids? (April 26, 2008)
A Fine White Powder (August 1, 2008)
The Industrial Treatment (August 8, 2008)
An Inquiry Emerges (August 14, 2008)
FDA To Haley: OSR#1 A Misbranded, Mislabeled, Unsafe Drug (June 24, 2010)
OSR: Fuel For Thought (July 7, 2010)
OSR: A Bevy Of Adverse Events (July 12, 2010)

What constitutes a blogger “bully”?

10 Jul

There are events around the autism blog-o-sphere that are troubling as of late. Events which bring up the question of bullying in a very real way.

First some background:

Andrew Wakefield is on a book tour. He has spoken at a park in Chicago and to small groups in New York, Phoenix and London. Events surrounding these engagements have very strange, if you ask me. And it is getting stranger.

The Chicago event was, well, a bit of damp squib, to quote Kev. Not a big event, even though it was timed to coincide with a large autism parent convention. Many of the attendees were actually skeptics who showed up as a bit of a silent protest.

The event in London was originally billed as “Dr. Andrew Wakefield is at a secret location in London with a select group of ticket holders for a book signing and Q&A session.” At one point it was going to simultaneously shown as a pay-per-view on the internet (something like $70, if I recall correctly), but ended up being free. The event location was kept secret at first and is reported to have been moved with vague comments of “threats”.

Frankly, I take any possibility of threats seriously and I worried that this might be serious. While I disagree with much of what Mr. Wakefield has to say, I would strongly condemn any threats to his talks.

When I heard that there was controversy about Mr. Wakefield’s Phoenix appearance, I took it seriously and wanted details.

The Phoenix event was held at the Ritz-Carlton Hotel. Prior to the event, one skeptical blogger emailed the Ritz-Carlton. She states that she emailed the Ritz-Carlton twice. Below is her communication:

Andrew Wakefield June 26 at The Ritz in Phoenix

Dear Sir / Madam,

I’m writing to express my extreme disappointment that such a well thought of hotel as the Ritz is playing host to this event on Saturday.

Disappointingly, The Autism Society of Greater Phoenix has chosen your venue to promote unsupported quack therapies and to support Andrew Wakefield, a man whose scaremongering has led to disastrous falls in vaccination levels among children. Levels have fallen so far that measles – a potentially fatal or crippling disease, even in countries with good levels of health care such as the UK – is now reported as once again being endemic here. Vaccination is arguably the greatest medical invention or discovery of our age, and has without doubt saved more lives worldwide than any other medical procedure. Hosting a book signing by Mr Wakefield would only indicate support for his unethical methods (including taking blood from children at a birthday party, and carrying out colonoscopies on vunerable autistic children for non-medically indicated reasons)

Many anti-vaccine activists want to return us to an age of deaths from preventable illnesses, claiming, against all evidence that vaccines are harmful, simply in order to promote their own agenda.

Andrew Wakefield is not a brave, maverick doctor, fighting the establishment, as The Autism Society of Greater Phoenix would have it; rather he has recently been struck off the medical register for horrific breaches of ethics involving non-indicated clinical procedures on children and undisclosed conflicts of interest.

Should you allow this event to go ahead, I fear your company’s reputation will be seriously tarnished, and respectfully ask you to reconsider your decision.

Best regards,

Rebecca Fisher

Andrew Wakefield – GMC ruling: http://www.gmc-uk.org/Wakefield_SPM_and_SANCTION.pdf_32595267.pdf
Vaccine preventable diseases – American Academy Of Paediatrics: http://www.aap.org/pressroom/aappr-photos.htm

The AutismOne newsletter portrayed the blogger’s actions as:

Rebecca Fisher: Pharma Blowhard or Concerned Citizen?

You can’t be a parent in this community without bumping into them. Every article, TV program, blog or radio show brings them out in force. The mention of “autism” or “Dr. Wakefield” brings them scurrying out from under their rocks snapping and snarling and spitting about the wonders of vaccines and their self-anointed roles as concerned citizens in protecting the pubic health.

It’s a scam and we all know it. Most of the bloggers, poseurs, and self-ordained autism experts have ties either directly or indirectly to pharma or mainstream medicine (which is really one and the same thing). Age of Autism has done a remarkable job outing Orac and shedding light on the soft underbelly of the vaccine apologists.

Rebecca Fisher of the UK has been very busy lately. Blogging here under the title “JABS Loonies – Justice, Awareness, Basic Support and Mind Blowing Stupidity,” Rebecca recently left the Internet safety of anonymity to engage in more concrete acts of aggression against our community.

Rebecca’s current mission is attempting to frighten, bully or pressure venues Dr. Wakefield is scheduled to speak at on his current book tour into canceling the event. Hotels are under siege by email, fax, and phone demanding they cancel Dr. Wakefield’s appearance.

For a week before this past Saturday, Rebecca attempted to intimidate the Phoenix Ritz-Carlton site of Dr. Wakefield’s latest talk into capitulation. To their credit the Ritz told her, in essence, to take a hike.

Rebecca, who also blogs as Becky Fisseux, will continue to act in a dangerous and reckless fashion until she is outed and her connections to pharma publically revealed.

Still the attacks will continue until we take legal and other appropriate actions necessary to incur real costs on those who spread lies and misinformation.

Unfortunately, the Ritz-Carlton Phoenix will not comment on the event. Ms. Fisher make a reasonable list of alleged facts that are unsupported within the complaint raised in the AutismOne newsletter. She requests proof that:

[She has] sent any more than two emails to the Ritz Carlton Group

She has] have ever telephoned the Ritz Carlton Group

I have ever sent a fax to the Ritz Carlton Group

I contacted the Ritz Carlton Group on more than one day

I used language that could be construed as “bullying”, “intimidating” or “harrassing” in my two emails (actually just one email, sent to two addresses)

The Ritz Carlton told me to “take a hike” – or in fact contacted me in any way

The AutismOne newsletter references recent events involving the blogger Orac at Respectful Insolence. It doesn’t speak well of AutismOne that they believed the Age of Autism blog piece about Orac. That piece claimed that the surgeon behind Orac had undisclosed financial ties to a pharmaceutical company, leading to a campaign to get him fired from his job. Seriously, people were encouraged in the comments on AoA to contact his employer. It is a pretty low moment for the Age of Autism. (if you are curious, Steven Novella takes apart the claimed conflict in his piece Age of Autism Witch Hunt.)

It would be all too easy to claim that the threats (and real) intimidation level is rising. I don’t know if that is the case. In recent years a blogger was expelled from an AutismOne conference for asking a tough but pertinent question of Terri Poling (mother of Hannah Poling, whose case before the vaccine court was very important–and will be again once the final settlement is reached and announced.) AutismOne is reported to have ejected journalists as well.

It is worth noting that blogger Kathleen Seidel was subpoenaed by vaccine injury lawyer Clifford Shoemaker.

I take threats seriously, as I stated above. I take bullying seriously too. It is worth questioning whether this statement “Rebecca’s current mission is attempting to frighten, bully or pressure venues Dr. Wakefield is scheduled to speak at on his current book tour into canceling the event” is really upheld by the facts. Since the Ritz-Carlton will not comment, I will await some sort of substantiation that what Ms. Fisher has done constitutes “frightening” or “bullying” or “pressure”.

I’ll leave you with the final line from the AutismOne newsletter piece on this:

“Still the attacks will continue until we take legal and other appropriate actions necessary to incur real costs on those who spread lies and misinformation.”

In support of David Gorski

22 Jun

To whomever it may concern,

You have probably recently had to deal with a handful of vitriolic comments regarding the online activities of David Gorski. You will probably have been pointed to an online essay by a young man called Jake Crosby in which he makes a series of claims regarding David Gorski and his ‘ties’ to vaccines/vaccine manufacturers and other entities.

I urge you to read these comments and this essay very, very carefully. Once you do I am in no doubt that you will see what the rest of us clearly can – that this work is the work of a highly impassioned young man who believes that he is right. He believes that vaccines cause autism to state it clearly and he believes that by having some kind of – any kind of – tie to a pharma organisation means that David Gorski is ‘tainted’. But what really annoys master Crosby is the fact that David Gorski regularly blogs in support of the science that clearly shows vaccines do not cause autism and blogs against the pseudo science that attempts – and continually fails- to draw any kind of a link between vaccines and autism.

So this, in master Crosby’s eyes, is David Gorski’s crime – supporting the science and decrying the bad science.

In order to cast some kind of suspicion over David Gorski’s support of science, Crosby has ‘discovered’ that Gorski is conducting research into ways to reuse some types of drugs – drugs developed by Sanofi-Aventis who of course also manufacture some vaccines. And that, despite another few hundred words from master Crosby is that. That is the sum total of his ‘investigation’ and the sum total of David Gorski’s crime.

The only real eye-opener on this issue is that Jake Crosby managed to wring out as many words as he did on this total non-issue.

I have known David Gorski online for a number of years. We often quote one another and link to one anothers posts. We regularly email each other and I was disappointed to be unable to meet him for drinks on a visit to the UK he took a few years ago. In my experience of the man he is rigorous, almost fanatical with regards to accuracy and brings these traits to many areas of blogging and online writing including the investigation of bad science.

Why does it matter to me? It matters because I have an autistic child and an autistic step child. When my autistic child was first diagnosed I firmly believed that her autism was caused by vaccines. It was only through being exposed to writings of David Gorski and his peers on the science of autism and the bad science of the autism/vaccine connection that I eventually saw for myself what was obvious: vaccines don’t cause autism and never did.

Scientists such as David Gorski often blog and write online anonymously. They do this because to be exposed to the sort of people Jake Crosby colludes with often means being exposed to harassment and threats. David Gorski is now finding that out for himself. I hope that you as his peers, colleagues and employers will see how vital it is that David Gorski continues blogging and that you will support him in both his work and his blogging.

The Thinking Person’s Guide to Autism

7 Jun

There’s a new blog/book project in town and its right here (or @thinkingautism on Twitter or here on Facebook).

The Thinking Person’s Guide to Autism (TPGA) is the book and website we wish had been available when our children with autism were first diagnosed.

…

Think of us as a little bit of Snopes for the autism community — trusted, accurate, and friendly. Our essays will cover informed approaches to autism and autism treatments, as well as the personal experiences of people with autism and their families.

There’s a great team of people behind this project and I for one am greatly looking forward to the content they put out.

The American Rally for Personal Rights – bit of a damp squib

27 May

Yesterday was the American Rally for Personal Rights (an anti-vaccine rally) held between 3pm and 5pm in a park in Chicago, US. In attendance was ex-doctor Andrew Wakefield in whose honour the rally was held.

Hoping for thousands, the organisers got what looks like a hundred or so (click for full size).

including one young man (A certain J. Crosby, Age of Autism Editor) who carried the sign ‘Autistics for Wakefield’

I’m not entirely certain who the autistics were. I mean I see Jake but no one else. Also in attendance were Wade Rankin, Erik Nanstiel, Boyd Haley, Bob Krakow and Jim Moody and for ‘name’ anti-vaxxers that was it. No Jenny McCarthy, No Jim Carrey, No Generation Rescue, No Age of Autism bigwigs (aside from young master Crosby of course).

Of course for bloggers such as I, this is a tad disappointing. There’s not really a lot to talk about when nothing much happens, nobody of any consequence shows up and the whole thing resembles a rain-soaked firecracker.

On the bright side, there were The Refusers who I’m pretty sure would’ve been good for a very hearty laugh. Aside from that – nothing really to tell. The sun was out, some anti-vaxxers waved a few signs around and the world collectively yawned.

See ANB’s take on it, he actually attended the rally himself.

Anne Dachel, Age of Autism Editor, makes remarkable claim

27 May

I was browsing the comments section of a seemingly innocuous story about autism – that early intervention might not be the universal panacea once thought – when I came across a comment from Anne Dachel, one of the leading ‘thinkers’ and editors behind the online anti-vaccine blog Age of Autism.

…I think a disorder that was unheard of 25 years ago…

I had to read it a couple of times to make sure I was seeing it right – I was – Anne Dachel believes autism was unheard of prior to 1985.

To say this is a remarkable claim is being overly fair to Dachel. Its one of those claims that is regularly made by the Age of Autism team that leaves one’s jaw on one’s chest with the sheer audacity of either its boldness or stupidity. It reminds one of John Best’s claim that autism was unheard of in China prior to 1999. Another rampant piece of stupidity.

As previously noted, Dachel writes for Age of Autism. I’ll leave you to form your own conclusions as to the accuracy of their blogging based on their Editors own bizarre beliefs about autism.

Blogging IMFAR: Wrap-Up Notes

23 May

One of the things I wanted to do in blogging about IMFAR, was try to provide a bit of a wrap-up of my experience there in Philadelphia this year. Since it was my first time attending an IMFAR, and I really had no idea what to expect ahead of time, I figured it might be useful to jot down some overall notes retrospectively.

First and foremost, IMAR is a scientific meeting. There is no shortage of introduction to what is out there in current autism research. This began with Wednesday’s pre-meeting press conference. It was there, that the press would learn about several selected abstracts (apparently thought to be worthy of media attention): the University of Rochester’s (Dr. Susan Hyman) negative GFCF study results, the Kennedy Krieger Institute’s (Dr. Brian Freedman) debunking of the 80% divorce rate claim, and others such as, landmark genetic studies, infant sleep fMRI as potential early diagnostic tool in the future, and social/educational intervention strategies that demonstrate the importance of peer involvement. Each of the study authors presenting their work to the press, spent about 5-10 minutes giving the highlights and taking a few questions, but in reality, each presentation was barely a thumbnail sketch of what the research was about and perhaps a minute of discussion about potential real world significance of the findings. You can read more about the items that caught my attention in the press conference at Blogging IMFAR: Opening Press Conference and GFCF Diet Trial Results and Blogging IMFAR: Autism And Divorce Debunked, Among Others.

Following the day of the press conference, IMFAR was off and running, with full daily schedules of presentation sessions, and poster sessions running the majority of the day (one floor below where the presentation sessions were taking place). On one hand, I suppose the science presentations could seem fairly frustrating to many. Like the press conference, the oral sessions presentations are given on a fairly tight schedule, and often contain little more than an introduction, a few minutes of methodology discussion, a quick look at statistical results, and time for one or two questions – then it’s on to the next, which might even be something only very loosely related at times.

For a typical parent, I think it’s quite possible they’d find the whole format approaching “tedious-to-learning” much of the time, with only an occasionally very interesting or very well-presented piece of research. Don’t get me wrong, I wouldn’t want detract from the likely importance of researchers having an open venue to share ideas with each other, but for me, there are only so many shotgun presentations you can listen to, or posters you can look at in one day.

On the other hand, IMFAR is a place where it seems ridiculously easy to get the big picture quickly, and even talk with expert researchers in the field of autism science if you are so inclined. It’s hard not to catch the what of what’s currently taking place in autism research world, as it’s everywhere – in the program, in the posters, and in the discussions. As an example, if one wanted to learn what’s taking place in autism research that’s using brain imaging, whether looking at language response and differences in infant siblings of autistic children, or looking at the potential impact of some specific intervention on brain funtion, researchers studying just those kinds of things are at IMFAR presenting and discussing their research. From what I saw, one can attend the relevant presentations, and then visit with researchers later on – I saw this occur on several occasions, with researchers like Eric Courchesne (University of California, San Diego). “Accessibile” is word that is probably a pretty good way to sum up my general thoughts on the science at IMFAR. while the format can seem very dry, especially to someone like myself (who didn’t arrive with a specific scientific field of interest that I was dying to scout out), the science and the researchers do seem really accessible.

Which brings me to what I thought was an important impression of IMFAR. The scientists really do seem accessible – willing to spend time for those with quesitons, and willing to provide explanation and lay translation where appropriate. On the first full day at IMFAR, I have to admit that I really didn’t know where to start. How was I ever going to explore all the science, and then distill that down to something digestible in size, yet explanatory of the trends in autism science? I was so fortunate to have the opportunity to meet with Dr. David Mandell. Besides being a local Philadelphia researcher, he was the Scientific Program Chair for IMFAR this year. And I could not be more appreciative of the time he gave to me (and LBRB readers), in sitting down to explain the trends in autism research at IMFAR – and he’s probably one of the best possible people to see and understand those trends, as he read every one of nearly a thousand abstracts accepted at IMFAR this year. If you want the inside scoop on the science at IMFAR, as well as an opportunity to simply get to know the thoughtful Dr. Mandell a little better, it can be found at Blogging IMFAR: Excerpts Of An Interview With David Mandell, ScD.

Speaking of thoughtful autism researchers, while at IMFAR, I literally ran into (interrupting his cell phone conversation while on an escalator) Dr. Roy Richard Grinker, professor of anthropology and human sciences, autism epdemiologist, author of the book “Unstrange Minds”, and wouldn’t you know it, a jazz pianist and marathoner too! Dr. Grinker was gracious enough to sit down with me for coffee, and share a little more about why he was at IMFAR with LBRB readers. You can read the interview at Blogging IMFAR: Meet Roy Richard Grinker.

At this point in my notes, we’ve arrived at midday Friday. And it as midday Friday when I see what I consider the most interesting science. As a recipient of a travel/attendance grant (that partially funded my trip to IMFAR) from the Autism Science Foundation, I was also invited to attend their “Science and Sandwiches” luncheon. It might be tempting to think I was attracted simply for the free food, but the sad truth was, that I had eaten a very late breakfast and wasn’t even hungry at the time of the luncheon. During the “Science and Sandwiches” lunch, each of 6 pre-doctoral students presented an overview of their research plans. These are pre-doctoral students who applied, and in turn, the Autism Science Foundation selected, to fund their research directly. They all seemed fairly interesting and unique, ranging from researching social conversation rules among ASD kids and infant emotions measurement, to very specific mouse model genetics/pharmacological experiments, to epidemiology. Yes, epidemiology. It might seem surprising that a young autism science advocacy org like ASF, or anyone for that matter, would fund epidemiology. I can’t help but think that field is already maturing to some degree in the U.S. I thought to myself, other than potential minority underrepresenation, what kind of breakthroughs in scientific understanding could we really get from epidemiology in the U.S.? I mean, we already know that we’re probably finally very close to what is a pretty stable 1 in 100. What else is there?

That’s when we were introduced to Matthew Maenner. Maenner is a pre-doctoral student of the University of Wisconsin, Madison (working under the mentorship of Dr. Maureen Durkin), who proposed, what to me, looks like a very interesting take on autism epidemiology with his research titled, “Phenotypic Heterogeneity and Early Identification of ASD in the United States”. He asked the luncheon group (of what looked like about 60 attendees), about how many possible combinations of the individual DSM diagnostic criterion can result in an ASD diagnosis. You know, if one looks at all the possible permutations of: “(I) A total of six (or more) items from (A), (B), and (C ), with at least two from (A), and one each from (B) and (C )” and the criteria for Asperger’s and PDD-NOS from the DSM IV-R, how many many combinations are there? It turns out there are 616 (I think I wrote that down correctly). He had a fascinating cloud-graph-type illustration of this (there’s probably a good technical term for this), that looked like a spiral galaxy – the point being that diagnostic criteria steer categorization to a shared core, but at the same time, there are numerous arms extending in several directions. He explained how he intended to look at the CDC’s ADDM data to begin to answer questions about the basis for the landscape of real world diagnoses compared to the actual possibilities described within the diagnostic criteria. Like a fool, I assumed that the ADDM data, like much of published autism epidemiology, tended to be focused on fairly simple prevalence, even dichotomous in nature (Autistic – yes/no, Asperger’s – yes/no, PDD-NOS – yes/no, X percent of all ASD’s = Autistic Disorder, etc.). Also, like a fool, I asked about him about this with something to the effect of, “In assuming the CDC’s ADDM data doesn’t have the resolution to go beyond diagnosis results, and into the individual combinations of criteria that result in those diagnoses, how are you going to even look at answering that question your research is about?”. He politely responds, explaining that, in fact, the CDC’s ADDM data does have this resolution. My assumption is way wrong, and this is an “Aha!” moment for me. We have tons of what is probably pretty good data available from the CDC, and it seems, to me, that no one has looked at it in quite this way before now.

So here’s my take on this ASF-funded doctoral student’s proposed research – he may be digging into something much more descriptive and potentially useful to the biological and educational sciences with respect to autism spectrum disorders, than has been done so previously (that I am aware of). If there’s epidemiology that can quantitatively describe the distribution of characteristics that result in ASD diagnoses, biological, and even educational research may have a leg up on being meaningful. As an example, suppose that this epidemiology determines that a certain percentage of ASD diagnoses include selection of the C – 4. “persistent preoccupation with parts of objects”. With real numbers, biological research may have a starting point to evaluate associations of differences in brain structure or function with respect to this characteristic. With real numbers, perhaps the success of specific educational strategies (that take advantage of this specific knowledge) can be meaningfully evaluated with more individualized approaches. Here’s the bottom line as I see it: Matthew Maenner is taking a solid step towards building understanding of the variation that occurs in autism spectrum disorders. It’s possible, if not likely, that his work could contribute to entirely new and much more individualized directions in other autism research. The days of any notion of singularity in etiologic origin of autism are long gone (in favor of complex combinations of numerous factors). Here’s a researcher who, in my opinion, understands that and will take steps towards building real understanding by looking at that distribution of variation. It wouldn’t surprise me in the least if “Matthew Maenner” is a name associated with the more interesting and useful autism epidemiology in the future.

So there you have it. That was my couple of days at IMFAR: an early look at some of the “newsworthy” science, an opportunity to learn much more about current trends in autism research from a hard-working scientist (the IMFAR Scientific Program Chair, Dr. David Mandell), a chance to sit down and chat with a very thoughtful researcher and author (Dr. Roy Richard Grinker), as well as first-hand look at some new research direction in graduate programs. All in all, it was a pretty interesting couple of days.

I’d also like to take just a minute and thank the Autism Science Foundation for partially, yet generously funding my travel (as a parent who blogs) to IMFAR. I had complete freedom to check out and write about whatever I wanted to, and it wouldn’t have been possible without their financial assistance.

(Disclosure: my attendance at IMFAR was funded in part, by a travel grant from the Autism Science Foundation.)

Blogging IMFAR: Meet Roy Richard Grinker

22 May

I had a neat opportunity here at IMFAR. Last night, as I was standing on the long escalator that traverses 3 floors from the IMFAR convention area to the lobby below, I glanced backwards to peek at the person behind me who was having a pretty animated conversation on a cell phone. His name tag read, “Roy Grinker”.

He noticed the glance (which was probably more like a bit of a stare, not too inconspicuous I suppose), and politely paused his conversation long enough for me to interrupt, introduce myself, and invite him to coffee this morning. He accepted.

Most LBRB readers will know Dr. Grinker as the author of “Unstrange Minds” and as a professor of anthropology and human sciences at The George Washington University. He continues to conduct autism research, and he has a role (that we’ll learn a little more about in a minute) at IMFAR too.

He arrives to coffee right on time, and is every bit as friendly as he appears in the pictures that often accompany articles about him online. He sits down to chat with me, and LBRB readers, so…

Meet Roy Richard Grinker, PhD

LBRB: Is it correct to say that your interest in autism research is with epidemiology?

RRG: Yes, my focus has been on epidemiology, but also on doing qualitative research on how culture influences the prevalence and recognition and management of developmental disabilities.

LBRB: Tell us a little more about what you mean by how culture influences those things. Is that willingness to diagnose, etc.?

RRG: Well, we don’t know very much, right now, about autism in other places in the world. It’s, at this point, an assumption that the onset, the core symptoms, and the course is universal. We don’t know, because we don’t have data from other cultures. For example, let alone phenotypes, we don’t have prevalence data for any country in the entire continent of Africa, any country in South America, any country in Asia other than Japan (that includes south Asia), and basically, in the international realm of autism research, it’s wide open.

LBRB: So what specifically brings you to IMFAR?

RGG: I came to the meeting this time primarily to meet and talk with people from other countries, where we don’t know much autism. And we have people here from all over the world. The reason that I’m wearing this button…

[He’s wearing a button with the IMFAR name and logo that reads, “DIVERSITY AMBASSADOR”]

…is to be part of IMFAR diversity.

LBRB: International reach?

RRG: International reach. It’s not so much like the American “diversity”, it is international diversity. We reach out to all the different countries, and as an example, there’s one autism researcher here from Nigeria. With this, he knows that I’m interested in meeting him. He can feel comfortable to just walk up and talk to me, or have coffee. There are a lot of people here from other countries who may not know anyone here.

LBRB: So you’re here for that purpose?

RRG: Yes, and to talk with other people at the meeting.

LBRB: Let’s switch gears a little. What about “American diversity”? What’s your take on the science about that, at a meeting like this?

RRG: In terms of diversity, I’m really inspired, inspired because, when a diversity committee meeting was held, there were about sixty people there. Most them are actually in the U.S., working in the U.S., and are interested in the barriers to care, and the obstacles to services within minority communities.

LBRB: That sounds like it could be interesting in and of itself.

RRG: We know that the age of diagnosis for minorities in the United States is significantly higher than the average age of diagnosis for non-minorities, and that means that they’re getting services later.

LBRB: What does the research science say about this?

RRG: Research supports the premise, one, that outcomes are better if interventions are earlier, and two, epidemiologic data supports the findings that African-American and Latino children are diagnosed later, and receive fewer services. There are data (but not published data) that I’m aware of, that show that even Latino children who are insured, don’t always get services as frequently as others. It could be that they were referred, but don’t take advantage of them, or perhaps there are other structural barricades; like they have insurance, but they also have three jobs, or they live far away from the services. We really don’t understand what all the barriers to uptake of care are, in minority populations. One of the projects I’m working on now is an NIMH-funded project to look at early identification of autism in two communities where there are virtually no autism services delivered.

[Dr. Grinker did provide a little more detail about one research project in southwest Florida, among migrant worker families, as well as a project in South Africa, from where he’d recently returned].

LBRB: So these are your real research interests?

RRG: There are three strands to my research. One strand is this work I’m doing in southwest Florida and South Africa. The second strand is the continued work on the prevalence of autism in South Korea, and we hope to report the results soon there, it’s been a long study – nearly thirty thousand children (the denominator in the sample). The third strand is my book writing – I love to write books.

LBRB: Tell us more about “Unstrange Minds”.

RRG: It just came out this week in Portuguese (so it’s available in Portugal and Brazil), and it really means a lot to me to be able to provide a message that people find uplifting. The thing is, that sometimes when people talk about my book, they focus on the argument about epidemic. And I think that’s important, and I spent a lot of time in my book going through the various reasons why autism diagnoses have increased. But, for me the most important part of the book is that it doesn’t present having a child with autism (or relative with autism) as a tragedy, or something that’s horrible and devastating. Rather, it’s a life experience which is distinctive, and can be incredibly rewarding. I take that positive perspective. I’m invited to give talks, occasionally. Sometimes I’ll give a talk somewhere, and I’ll ask why they invited me. Frequently the answer is, “because you’re not angry”. There are plenty of people out there who give public presentations that have to do with their anger – the anger that the community is not answering their questions, the anger that the services aren’t there, anger that their theory of causation isn’t taken seriously. I guess some people just want to hear somebody who’s got a more positive perspective, without being a Pollyanna, and I think that’s what I offered in the book.  To me, that’s the most rewarding thing.

LBRB: Can you give a personal scoop to Left Brain/Right Brain Readers? What do you like to do in your free time? Do you have any hobbies?

RRG: I have two hobbies. Jazz piano – and I’ve played jazz piano since I was very young. I played throughout college and graduate school. I played alumni parties, that sort of stuff. And I actually still work with a really talented guy in Washington, I’m still, you know, “taking lessons”. I started when I was four, I didn’t start jazz at four, but I probably started jazz when I was about 9 or 10. My parents’ apartment building was down the street from a jazz club.

[Grinker went on to explain that he was able to spend a little time at that jazz club (back in that day), and although I didn’t take down all of the names, he quickly rattled through a list of jazz greats (such as Dizzy Gillespie) he was able to meet in his youth].

What about hobby number two? He just finished (and finished well in) the Boston Marathon.

(Disclosure: my attendance at IMFAR was funded in part, by a travel grant from the Autism Science Foundation.)

Blogging IMFAR: Exceprts Of An Interview With David Mandell, ScD

21 May

So I set out blog about the first full day at IMAR, and quickly realized I’d bitten off way more than I can chew. I had tons of scribbled notes after attending most of the epidemiology track this morning, perusing the research posters, and listening to some presentations on specific “treatments”, which were essentially, although very different from one another, targeted educational strategies in many cases. There’s just so much at IMFAR, it’s really impossible to provide any great detail about any one thing. The presentations move very quickly, at about 12 minutes each, with 2-3 questions at the end, and it seems like there’s really only time to hear about the “what” the research is about.

 If this were to be successfully blogged with any depth beyond what’s contained in the abstracts (which anyone can view online), it would probably require about 8-10 people, holding more in-depth discusssions with several research teams, just to provide spotty coverage. If you’ve ever heard the complaint that there just isn’t enough autism research taking place, IMFAR is a pretty good example of the fact that such complaint may not be based in reality. So what to do about this?

Since I have the opportunity to be here, and see and hear what’s taking place, what can I provide to readers that can’t be here? Sure, there is a little additional detail provided by the presenting researchers (their abstract presentations often contain slides that are helpful in barely understanding the abstract’s material details), but the truth is, what’s seen and heard here is actually quite similar to exactly what’s in the abstracts. So where to, from here?

I don’t expect everyone to agree, but I think it might be of at least a little value, to simply meet some of the people who are here. And there are some fascinating people here. Perhaps some would find it informative if I (we) have an opportunity to hear from someone who is heavily interleaved with the inside scene of the science of IMFAR? We don’t have to talk all science. Perhaps we could find out more about them. You know? Get to know ’em a little more than we did before.

So, here we go. Meet David Mandell, ScD.

(Incidentally, Sullivan has written about some research that has his name on it here at LBRB).

Dr. Mandell is a researcher himself, and the Associate Director of the Center for Autism Research, at The Children’s Hospital of Philadelphia. He’s also this year’s Scientific Program Chair for IMFAR. Although he has the help and participation of several collaborative teams in varying disciplines in the field of autism research, it’s essentially his responsibility to put together the scientific program that really makes IMFAR what it is this year.

My first-impression, and lay opinion, is that he seems way too young to be as accomplished as he appears to be. Looks can be deceiving though. He’s friendly, yet scientifically earnest. He sits down with me for half an hour, simply to share some of his take on, and enthusiasm for the autism research and IMFAR. I won’t agree with everything he says, but his points are thoughtful, and clearly communicated. Let’s meet Dr. Mandell, and learn a little more about his take on IMFAR along the way, shall we? So that you, dear readers, can share a little in this IMFAR experience with me, and get something that you couldn’t otherwise get from the book of abstracts, let’s chat with David Mandell ScD.

Exceprts of an interview with David Mandell ScD

LBRB: How did you become involved in IMFAR? How did you go from being a researcher to chairing such a large scientific thing like this?

DM: My first IMFAR was in 2001. It was maybe the first or second one, yeah the second, and I was a post-doc. My training was as a psychiatric epidemiologist. I had originally come to the University of Pennsylvania to work on a CDC study to do surveillance – to look at the number of kids with autism, and it was actually at IMAR that one of the keynote speakers set my research agenda for the rest of my life.

LBRB: Who was that?

DM: It was Peter Mundy, who’s now at the Mind Institute (at the University Of Miami before that). There was a lot of talk about screening instruments, and the MCHAT was of great interest to people, and: How early can we recognize these kids? How can we find the ones that we’re missing? And, you know, we are getting better and better at identifying these kids with autism, and the communities in which we’re identifying them, are completely unprepared to meet their needs. And what are we going to do about that?

LBRB: Speaking of identification and missing kids, you’ve done some research with ethnic disparity. Are those missing groups what got your interest in epidemiology? Or, was there other stuff?

DM: I sort of came at it backwards, and I came to autism sort of late. I knew from about the time I was twelve that I wanted to be a child psychologist. I thought that’s what I wanted to do. I had always worked at camps. I worked with underpriveleged kids. I knew I wanted to work with kids, and I was particularly interested in working with kids with emotional and behvioral problems. I spent most of my college years, and after college, working in psychiatric hospital, working with Guatemalan refugee children (preparing them for entry into the public school system), and I worked with adolescents who had psychiatric disorders, and who’d abused substances. And it was at one of my jobs, sort of later in that path, that I was working for a place called the Chidren of Alcoholics Foundation, and I worked developing curricula for professionals who were working with children from addicted families. So, we were developing these programs, we were training teachers in recognizing when there may be problems at home and what to do about it, helping pediatricians address very sensitive topics during the very brief pediatric visit and what to do when they uncover problems. And so we developed these programs, we’d get them published, and I’d go out and I’d do all these trainings, and we’d ask for evaluations, and the evaluations would always come back with, “yes everybody loved the training”. We had no idea if what we were doing was making any difference in any kid’s life. There was no follow-up. There was no evaluation – and I became very interested in evaluation.

LBRB: So, actually measuring results?

DM: Measuring change. How do we know what we’re doing works? Some of the members of our scientific advisory board at the Children of Alcoholics Foundation, who I worked very closely with in developing the curricula, suggested that I go back to graduate school, and they suggested a masters in public health – with a focus on program evaluation (which was my interest).

LBRB: And you said, “sure, why not”?

DM: I applied to schools, and I thought, “that’s great”. All of my essays were about how I was going to take the skills that I learned in the program and bring them back to the front line work that I had been doing. And as it turned out, I couldn’t afford the masters program. It was very expensive and there were no scholarships, but if I switched my application to the doctoral program, and I got in, they would cover my tuition give me a stipend.

LBRB: That seems worthwhile.

DM: Yes. So I ended up in the doctoral program instead of the masters program.

LBRB: So where does your research interest take you today?

DM: So my interests are not very distant from where they were when I started.

LBRB: Epidemiology?

DM: Well, no. Epidemiology is a set of tools. Epidemiology is literally the study of the health and illness, and its distribution in a population. You can do that with any health condition. But, it also teaches a systematic set of tools for evalutating – the association of different variables. Sometimes we think about those variables as risk factors. So there’s a lot of discussion at IMFAR this year about… there’s several studies on, prematurity, and fertility problems, and fertility treatment, and its association with autism. So those are large scale epdiemiological studies. They’re looking at different variables in the population. But you can also use those same tools to look at positive outcomes associated with treatment. So I take that skillset, those tools that you learn in epidemiology and apply them to looking at treatment and other supports that children with autism and their families get, and what the associated outcomes are.

LBRB: You mentioned in yesterday’s press conference that a theme in this year’s research was treatment research beginning to make a real difference. Where do you see that “real difference” translating into everyday life for families or schools?

DM: So let me give you one example. One of the huge challenges we have in the U.S. is that we can’t get insurance companies to pay for treatment for children with autism. The reason the insurance companies give is that treatments don’t have the level of evidence to support them that those insurance companies often require. And the highest level of evidence for them, is a randomized trial. One of the really exciting things about the treatment studies that are being presented here, is a dramatic increase in the number that use randomization as part of their model. And so these are treatment studies, that when published, then become the standard of care. They can be used as a level of evidence to support changes to the decision rules that insurance companies have. And I’m already getting calls from insurance companies about, “How do we think about restructuring and financing, so that we can support these kinds of interventions?” That’s one, I think probably the most obvious real world example.

LBRB: Tell me more about your role with IMFAR? How did you get so involved?

DM: Well, I’m the local boy. So a lot of it is, you know, I’m from Philadelphia, from the University of Pennsylvania…meeting chair and program director..

LBRB: So you were elected this year?

DM: Yeah,  that’s right.

Bob Schultz is the director of the Center For Autism Research, and is the immediate past president of IMFAR, and he had just come from Yale to the Children’s Hospital of Philadelphia, and he’d asked me to be the associate director of the center. He also asked me if I would chair the meeting.

LBRB: It’s a one year appointment?

DM: Yes. I think he saw it as something that would be beneficial to me. But it’s exhausting.

LBRB: I’ll bet. The program is huge.

DM: I read nine hundred and eighty-seven abstracts.

LBRB: You read every abstract?

DM: I read every abstract. You manange the program committee. You manange the reviewers. The people on the program committee are brilliant, and very dedicated to the field. So a huge part of it is via learning from them what’s important in their particular discipline. And the second thing is by reading all the abstracts, you really begin to see the themes that are emerging in the science.

What’s really exciting to me about this IMFAR is that the really exiciting science is happening in between the traditional disciplinary boundaries. So we used to think about there are the genetics ones, and there are the animal models ones, right, and there’s a biological mechanisms in humans one, and there was pharmacological treatment, and there’s behavioral treatment. And then, sort of here over on the side, there’s epidemiology and services research, and policy type stuff. These were very separate tracks, with very little crossover. And now I think the message, or at least one of the messages at IMFAR is that these disciplines have to talk to each other. It’s by collaborating, and it’s by training new investigators who have expertise in at least two of those disciplines where we’re going to see the most exciting science.

LBRB: So this is a huge program. What are you going back to? What’s next for you after IMFAR?

DM: So I have two things. My particular interest is how you take evidence-based interventions and implement them in communities so that they are effective and they sustain. My group is presenting tomorrow on our study, the autism structural methods study. We partnered with the school disctrict of Philadelphia, we trained teachers in 50 classrooms in evidence-based interventions and in looking at outcomes for kids. So part of my research agenda is expanding that, expanding it up and down the age span, and also thinking about what the next steps are.

LBRB: That sounds heavily educational. Do you consider that autism “treatment”?

DM: I call it what the funder needs it to be called. So this sort of gets to the other half of my research. The other half is actually going much more biological. Which is, we have kids who are phenomenal responders to the behavioral intervention, and then we have kids who aren’t. Why? What is changing in their brains as a result of the intervention; because any behavior you observe has a correlate in brain function. If we can find those correlates, like Eric Courchesne was presenting, it is going to help us understand how to better target our behavioral strategies, and it’s going to give us earlier markers… So I want to connect the behavioral interventions to the biology. Because I think ultimately what we’re going to see, is that we will find systems in the brains of children with autism that are not functioning that way we would hope they might, and that we might have biological interventions (like medication). A medication may help correct that system, but that child still has to learn. And so I think the most exciting interventions are going to come from pairing mecdications with the different strategies for learning. So that’s the other direction my research is going.

LBRB: Does any of this leave you any free time? What do you like to do on a Saturday? Do you take time off from research?

DM: I take my kids to dance class on Saturdays. And, I fence.

LBRB: That’s not something you hear too often…

DM: That’s my evening activity.

LBRB: I don’t know anything about fencing, is that good exercise?

DM: Yeah, it is good exercise. But the thing about academics in general is that you never turn it off. I definitely keep a notebook by my bed. You wake up in the middle of the night with an idea, and it gets written down. You never really turn it off, but like with any job, you have to make time for yourself and your family. I think people do that with varying degrees of success.

LBRB: Are you pretty good with that?

Pretty good. I have a six year-old and a four and a half year-old. They go to bed at seven.

LBRB: Wow! That’s early. You’ll have to share your secret with me for that?

DM: My secret is my wife.

Dr. Mandell had much more to share about what he considers success in autism research, and explained personal reward from succcess and  small change at local Philadelphia schools.  I’d really have loved to share more, but learned a valuable lesson during writing this post – I really suck at transcription. I hope you enjoyed hearing from Dr. Mandell though. I know enjoyed hearing his take on the IMFAR science in person, and I thank him for making a little time for LBRB.

(Disclosure: my attendance at IMFAR was funded in part, by a travel grant from the Autism Science Foundation.)

Blogging IMFAR: Autism And Divorce Debunked, Among Others

20 May

Autism And Divorce Debunked

Does anyone really believe that whopper of an urban-legend that goes something like this – “The divorce rate among families with autistic children is 80%!”?

Sure, many people do believe it, and I wrote about this topic when the Easter Seals Living with Autism survey results were released a little over a year ago, here. You probably won’t be surprised, but the often repeated 80% statistic looks like pure online mythology. Sullivan has the early notes here. And some of the more mainstream media have the story as well.

As pointed out previously by other LBRB commenters, and in addition to the Easter Seals “Living With Autism” survey, there is some existing science on the subject that essentially shows that autistic children are no more likely to live in divorced households than non-ASD children.

– Montes & Halterman, Psychological Functioning and Coping Among Mothers of Children With Autism: A Population-Based Study, Pediatrics 2007;119;e1040-e1046

– Montes & Halterman, Characteristics of school-age children with autism in the United States, J Dev Behav Pediatr. 2006;27:379–385

Well, now there’s a much larger research study heading for publication. I had the opportunity to sit down with Brian Freedman PhD, from the Kennedy Krieger Institute’s Center For Autism And Related Disorders in Baltimore, MD (the study’s lead author).

When asked about how he became interested in pursuing researching the 80% divorce rate urban legend, he explained that as a result of hearing concern about family stressors and divorce from families that he works with, he wanted to find the original source of the statistic. Freedman went on to explain that he set out locate a scientific source for the statistic, but that the science to support it just wasn’t out there.

On the topic of working with families regularly, Freedman also shared that, “an important consideration in providing information to families, is that the information provided is correct, and evidence-based”.

The results of the study were stated as follows at the press conference:

The weighted unadjusted percentage of children with ASD belonging to a family with two married biological or adoptive parents was 64%, as compared to 65.2% for children who do not have an ASD.

In fact, in addition to finding “no consistent evidence of an association between a child having an ASD diagnosis and that child living in a traditional vs. non-traditional family”, the abstract from Freedman’s research goes on to say that once variables of co-occurring psychiatric disorders are controlled for,
“our results show that a child with an ASD is slighty more likely than those without ASD to live in a traditional household”.

How does that translate to the 80% divorce rate myth? It blows it out of the water. The 80% divorce rate myth predicts that only 20% percent of autistic children would live with married parents (or at least it allows for that perception). Based on this research, reality would appear to dictate that 64% of autistic children live with two married parents, pretty much just like non-ASD kids.

Interestingly, and although no research is ever free of any limitations, this seems to be a large, and probably fairly population-representative study. The data for children originated with the National Survey for Child Health (Blumberg et al., 2009), which is not only very recent, it’s inclusive of over 77,000 children aged 3-17.

What? Low levels of “quality indicators” on autism websites?

Really?

Okay, so no one is going to be surprised by this one, at least LBRB readers aren’t anyway. An abstract presented at today’s press conference details research by a team at the Yale Child Study Center.

122.001 Pressence of Quality Indicators On Autism Websites. B. Reichow*1, J. Halpern2 and F. R. Volkmar3, (1)Yale Child Study Center, (2)Fordham University, (3)Yale School of Medicine

See page 452 of the online abstract book for the rest of the study detail, but I’ll save you some time, and share with you that if autism websites in general were being graded on the presence of some selected objective indicators of website quality, the majority would be getting an “F”. Most people probably wouldn’t eat in restaurants with failing health grades, why would they apparently seek information about autism from the internet? Perhaps that “why”, or even the implied assertion on my part that this is where people do get information about autism, will have to go undiscussed. The fact is, the websites that are out there (that turn up for very generic searches in popular search engines), are really lacking when it comes to quality indicators.

Results: On average, the 164 websites analyzed for this study suggested autism related websites contained less than 6 of 8 quality indicators. Nearly 1 in 5 websites offered a product or service for purchase, and/or promoted a miracle cure. These websites were also, on average, some of the least likely websites to contain the quality indicators.

As I was hoping to learn more about just what the website “quality indicators” were, I was fortunate enough to have a chance to sit down and chat briefly with study’s lead author, Brian Reichow. He shared some of the important ones with me, and I think most readers would agree with the importance of their presence on trusted websites – things like: clear authorship (who’s written the website’s content), the use of references (citing sources), website currency (out of date could be a problem), clear disclaimers with respect to expertise and advice, reading level, and presence of a clear feedback mechanism.

Yep, I do wonder if Left Brain/Right Brain was picked up in those top 100 searches conducted by these researchers, and yep, I wonder how LB/RB fared by their actual criteria.

Other interesting press conference items.

There were, of course, more abstracts presented than the two that interested me the most which I’ve described here. I’ll have to simply point them out with some very brief notes and abstract pages noted.

Kids learn better from their peers Page 17

104.004 Social Inclusion of Children with ASD at School: Effects of a Randomized Controlled Treatment Study. C. Kasari*, University of California, Los Angeles

Dr. Kasari shared some interesting results, that will probably seem like a no-brainer to many. It’s good to have some supporting science though. Autistic kids targeted along with peers for what looks to me like “inclusion intervention” (such as specific paired-friend playground activities during recess), did better on some specific social measurements than kids targeted for intervention, but not along with peers.

Sleep fMRI as a diagnostic tool? Page 125

107.002 Abnormal Brain Response to Language Stimuli in Sleeping Infants and Toddlers with ASD. L. T. Eyler*1, K. Pierce2 and E. Courchesne2, (1)University of California San Diego, (2)University of California, San Diego

Admittedly, I find this fascinating. There is emerging brain imaging and a tool that may lead to the ability to diagnosis of autism very early – like infant early. This particular research group has identified a potential abnormality in the laterality of language in autistic children, as identified by the use of a newly developed sleep fMRI. Of course this raises a million potential ethical quesitons, but it seems possible that understanding potential language acquisition issues could lead to the development of new adaptive and perhaps helpful early teaching/parenting/family strategies.

Tomorrow’s program

In case anyone wants to follow along in the program (see around page 12 of the PDF), I’ll be trying to attend the following tomorrow:

8:15-9:30 Keynote (Mouse Models…)

10:00-12:00 Oral Session Epidemiology 1

1:30-3:30 The Ethics of Communicating Scientific Risk

4:00 Tom Insel – IACC Upate

(Disclosure: my attendance at IMFAR was funded in part, by a travel grant from the Autism Science Foundation.)

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